Reggie Sorensen's new hope for son with cystic fibrosis

Reggie Sorensen has been waiting an excruciating four years for Cystic Fibrosis (CF) medication Orkambi to be added to the Pharmaceutical Benefits Scheme (PBS).

Son Lucas, 9, suffers from CF -- a inherited life-threatening disorder that damages the lungs and digestive system.

Orkambi has been on the radar of the Australia CF community's radar for years, hailed as a miracle treatment for the chronic, life-limiting illness due to its ability to break down the mucus that affects children like Lucas' breathing, but also help him put on some much-needed weight.

Lucas, nine, and daughter Mia, 11. (Supplied )

Since his birth, Reggie has been managing her son's condition with a combination of medication, physical therapies, breathing machines and endless trips to the doctor and hospital.

"He hasn't been in hospital for over a year now, but he can be okay and then just all of a sudden get sick," Sorensen tells 9Honey. "Like the other day when he woke up I could smell his breath -- it changes when he's getting sick -- and then the wet rattling sound [begins] and he has to go on antibiotics straight away to nip it in the bud."

Last Friday, when Sorensen was invited to listen to an important announcement via a live stream being hosted by Cystic Fibrosis Australia, she didn't know what to expect.

"I was sitting there watching for almost an hour and nothing was happening, then all of a sudden BANG," she says of the incredible news.

Previously the treatment was out of reach for most CF families at a cost of approximately $250,000 each year.

Lucas is already on an overwhelming regimen of medications including the enzyme Creon to aid digestion, vitamin Vit Adeck to prevent malnourishment, several salt tablets a day (particularly during summer) due to his body's inability to reabsorb the salt he loses from sweating and Pylmozyme which he inhales through a nebulizer to try and break down the mucus in his lungs that make it so difficult for him to breathe.

Sorensen isn't sure yet of how immediate the impact of Orkambi will have on her son's treatment regimen, but she is hopeful he will enjoy a better quality of life.

"At the moment he's at school maybe four days a week," she says. "Then there's the hospital stays when he gets an infection which are normally one or two weeks."

While Lucas hasn't been in hospital for over a year, he still struggles to put on weight, regardless of the foods his devoted mum offers him.

"Even at McDonald's he won't each much," she says, adding that one of her hopes is that as a result of taking Orkambi he will put on some weight to provide a buffer for when he does get sick.

"This will help him breathe by breaking down the mucus in his lungs, breathe easier and put on weight," she says.

Sorensen is thrilled her son will now have access to the potentially life-saving Cystic Fibrosis treatment. (Supplied )

Of course, Sorensen understands that Orkambi isn't without it's side effects. As part of the CF community, the mother-of-two was speaking to a sufferer overseas who warned of possible symptoms during the first few months of treatment, which he assured her would settle down and improve Lucas' overall health.

"He said the first six months was hell but then it was awesome," she said.

While winter is hard for Lucas because he tends to pick up illnesses easily, summer is equally problematic due to excessive sweating, but Sorensen has become an expert at managing each and every health challenge the condition causes.

And while life is hard for the little boy, he isn't immune to the same misbehaviour as other adolescents, recently 'accidentally' spending $300 while playing Fortnite.

"He had a gift card for his birthday and he spent that, and then that ran out and he kept spending money and it was coming off my credit card," she says. "I was about to yell but then he'd have a panic attack and it just wasn't worth it.

"There was no point."

Lucas averages around four days a week at school and hospital stays of up to two weeks each time. (Supplied )

Sorensen is also battling her own health challenges. The 43-year-old has been suffering dizzy spells, rapid heart rate and migraines that last for days as well as choking fits while eating. She was also diagnosed with a hole in her heart earlier this year which may require surgery, not to mention the fact she is legally blind due to a condition called Retinitis Pigmentosa.

"I'm going to hospital this week," she says. "I'm seeing the throat specialist because I keep choking when I'm eating and I'm seeing a neurologist because I've been getting really bad migraines. Two weeks ago I had a migraine that lasted for five days and I had a second episode where I thought I was having a stroke and my face dropped and my sister had to rush me to the doctor.

"I had to lie on the table until my heart rate went down."

When not worrying about her son's health or her own, Sorensen is focused on daughter Mia, 11, who begins high school next year.

"She's grown beyond her 11 years," Reggie says proudly, adding that she feels her daughter is beautiful enough to be a model, or whatever she wants to become.

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